Oh, man ... sigh

The hardest part of dealing with all this is when the tasks, the calls, just the daily things you do slip through the cracks. It is unlike me not to return calls, to ignore requests, to not follow through. But yesterday afternoon I had enough of dealing with this insurance fiasco. I let it go - let it all go - and just read a book. I thought that my brain needed to untense - and I feel better today. Did Pilates this morning and Donna taught me Body Mapping, a way to clear out my joints and let my body repair itself. My surgery arm already feels more mobile.

Boeing Clinical Advocacy called this morning and she is going to call Dr. Kuske's office and see if she can get past the gatekeeper and talk with him. I also faxed her everything, and Dr. McFall wrote a letter supporting Dr. Kuske and she got that, too. I've prepared myself to not go down to Arizona next week. One more thing to take care of - the airline ticket - what to do? I also paged Dr. Ben Anderson this morning but he has not returned my call. My thought was that he could call Dr. Kuske for me, since they are friends.

Just writing this makes me tired. Got a lovely card from Mary Ellen Johnson - how did she know I needed it???

More damn the insurance company!

I found an insurance advocate, but after a lot of conversation and investigation, she turned me down - she did not see how she could win this appeal in a timely manner. She gave me excellent advice, guidance, and a road map to do this myself. So I have spend the last 5 hours mulling this over in my mind - She said there is no real scientific evidence that what I want is better than what has been offered, and sent me articles attesting to that - but I found just as many articles attesting the opposite way. I need to make a list of what to do:

Call Dr. Kuske's office - I need him to clarify his sentence about 'not meeting current guidelines' - He told me he did tumors up to 4 cm, and mine of 3.3 was outside current guidelines of 3 cm, but he could do it. That last paragraph of his letter ... now that I've had the surgery and test results are negative for invasion ...

See Dr. McFall tomorrow - ask her to write a letter augmenting the choice of Dr. Kuske for radiation.

Posted on Breast Cancer.Org for help from other women who have had to face down their insurance companies.

The size of the tumor removed is outside the current guidelines for partial breast radiation/brachtherapy. I was offered only whole breast radiation in my 50 mile radius. I will not do that for the reasons listed below.

Dr. Robert Kuske is a pioneer in the use of brachytherapy. I faxed him my pathology reports and he asked that I fly down to see him in Arizona, which I did. He examined me and said although I was outside the guidelines, he could offer brachytherapy to me. That is what his letter said. He offered it to me, he can do it.

Because Dr. Kuske is a pioneer and very skilled - he can do brachytherapy on me. Oncologists in my area do not have his level of skill. They can't do it. That is why they would only offer WBR.

I have Regence Select, which is the Boeing Plan that allows only network treatment. In January, I can change my plan to Boeing Traditional - that allows me to go anywhere to have treatment, including Dr.  Kuske in Arizona, without having to ask for permission. I just can't wait  4 months - there is a time constraint on doing radiation after surgery.

Damn the insurance companies!!!

Regence Select decided today they will not pay for radiation in Arizona. They didn't read any of the documentation, and I realize this is just the first volley. I hate playing these games - it takes so much energy to figure out what they want to hear!! The worst part is that in January I can change my insurance and this effort will not be needed - I can go anywhere I want to go for treatment - but medically I cannot wait that long. Just keep pushing, I guess.

After second surgery

I'm having surgery today at Valley - removal of 4 more lymph nodes and some microcalcifications. I will be home later this afternoon. I'm feeling confident all will go well, but would appreciate your good thoughts and energy!! Love to you all - thank you for everything.


I shouldn't even be on the computer, but the 'caine hasn't worn off yet - things went swimmingly well - My girlfriend Nathalie got me home, I had chicken noodle soup and crackers and oreo cookies and I will take a pain pill before I take a nap. No drain, no elastic wrap, no news of the lymph nodes or even if the micros are malignant - I will see my surgeon next Monday for that info. Thank you all for your love and prayers - I know that is why it all went perfectly!

Feel great. All went well. Since I had done this three months ago I was prepared. Anesthesiologist remarked on how healthy I was. My pulse was 50 - amazing!! Nathalie brought me home. I slept not all that well, but feel fine. In between stage where you know you shouldn't do anything but feel good enough to do stuff! Think I might get a pedicure this afternoon. Need ice for my chest and called Mary and left a message. My mom called yesterday. Very good. Told her she was learning fast!

The Second Part of BC

I am having my second surgery Monday morning. Dr. McFall is removing 4 more lymph nodes and microscopic calcifications. The expectation is that the lymph nodes will be clear. Two weeks of healing and then I will be on my way to the Arizona Breast Cancer Clinic for 1 week of targeted radiation therapy. YAY!!!!


But first I have stuff to do. Meeting a girlfriend this afternoon to see the movie Eat Pray Love. Pick up another girlfriend tomorrow at 5 am to support the Lake Meridian Triathlon put on by Raise the Bar. I signed up before I knew I was going to have surgery, and the oncologist at Seattle Wellness thought that doing a tri the day before surgery was not the wisest thing to do! Oh, well, next year. At least I get to yell a lot!

Second Surgery - From Facebook

The doctor in Arizona was charming - even to making sure sure my birth date was correct because I certainly didn't look 57 :)) He also said he had no problem giving me the radiation I wanted - after all, he is the one who pioneered this technique and the size was not an issue for him. He also praised my surgeon for her superb job leaving him the markers he needed to see where to go. He ordered a post-surgery mammogram to make sure all the calcifications were removed. He also strongly encouraged me to have 4 more lymph nodes removed and tested 'just to be sure" there were no cancer cells. And he also talked with my surgeon to explain all this. He made me feel like it was all about me! (He also hasn't been married all that long - we had a great discussion about how hard it is to find a new mate at our age!)
The new mammogram showed several calcifications the size of pin heads. Those need to be removed. Removing four nodes will not impact me as far as lymphedema goes (swelling and pain and weak arm that is a common side affect of lymph node removal). Surgery is scheduled for August 23 at Valley.

Two weeks after surgery, (assuming the nodes are cancer free, which they are expected to be because of the pathology) I will fly to Phoenix and begin radiation - 5 days, twice a day, targeted to the place in my breast where the tumor was, no side effects - then I'm done! I should be home around September 20.

So my questions were:

My petscan said I had no cancer cells, why remove any more lymph nodes? Answer: Because no technology surpasses actually looking at the nodes through a microscope. The petscan cannot see microscopic cancer cells.

Why will removing four nodes make everyone happy? Because that is the standard of care (sorta!) when you have one positive sentinel (the leader of the pack) like I did - the doctor in Arizona wants to make sure I am eligible for the radiation he will do and my surgeon agrees.

Why remove those calcifications? Because my cancer was found inside calcifications, so it is not unusual to remove any left behind. Cancer or not, I want those out!

I found an article written last December saying a survey showed well educated women who live alone are hardest hit emotionally by breast cancer. That is why you (especially you) are so vital to my success in getting though this in one healthy piece - thanks for being there for me - I love you all - and I am so fortunate!!